Wednesday, August 1, 2012

Aug. It is AUGUST

I can't believe I haven't posted since July 6th!

Let's dive right in.  All is well.  So well.   Gary is back, and back BIG.  Muscles are not 100 but 92%.  How I calculate that I have no idea.  But stepping up stairs, gaining confidence that he never had.  Between weekly pulses, and physical therapy, we are doing great.  Our last infusion was July 23  It was originally scheduled for July 18.  We had gone on a camping trip.  My most amazing sister and her incredible husband drove their trailer up to a campground they have a membership too.  Parked it for us to let us camp.  We had planned for the week but took what we could get.  Gary's infusion was mid week, so when planning it I thought , no biggie, we will just pop over to the hospital, do a quick overnight and be back.  I often do that.  I think you could safely say it is a fault of mine.  The words are so much easier.  I often do the same thing at the beginning of my long runs.  "It's only 17 miles."   The day came.  The campground had a pool, hot tub, and putt putt golf.  How could I look into those eyes and say we have to go.  I called and asked to reschedule.  They agreed.  I am sure I messed schedules up.  I am sure I irritated a few.  But three years of this,  and someone needed a much deserved PASS.

So that is what we did.  I am so glad we did too.  Our reservation did not go through the week.  We ended up having to come home early because the camp ground was out of space.

Our infusion was Monday the 23rd.  We went to clinic at 11am.  We were there for nearly 2 hours.  I just love our doctor.  Well, she is the fellow on rotation but I think she is beyond amazing.  She listens to every detail.  Every view.  So that is what took so long.  She explained to me that the official THURSDAY meeting  they talked about Gary for awhile.  Gary only has two more cytoxan treatments in his series of seven.  They talked about which direction to go in next.  He can't stay on cytoxan forever.  I want grand babies some day after all so lets no push it.  Can't stay on IV steroids forever either.  Or can we?   I don't know.   I love the talk of remission, which we didn't discuss because I feel we are a long way from hit.  Steroids are his bandaid.  While I will take it and rejoice in it, I still feel we have a journey to get there.   I am grateful the road is bumpy.  We took a xray to see if the calcium is entering his joints.  It looks as if there is a donut shape around his the joint.   No problems with movement.  The xrays were inconclusive.  It seemed the calcium was staying of the joint but they couldn't see the joint itself because there was so much calcium.   I like what his deposits are doing right now.  They have all reduced in size.  He does have some trouble some calcium in his bottom.  Right at the top of his crack.  It is slowly seeping out.  It itches at most but still.  It does look bruised around some spots.  My opinion is too keep the pamidronate infusions up  monthly.  I think the steroids have a lot to do with the reduction in inflammation, all over his body.  All labs are clear.  They did check for iron in his blood.  It keeps coming back low.  They did a binding iron test thing and it was ok so press on.   

The conclusion of our long conversation was, well, I think she was just seeking my opinion.  She wanted to know what I thought.  Did I think we have ever truly gotten Gary's JDM under control.  Turned off?  Have we ever been in a place where we thought maybe just maybe we hit the pathway.

No.  No we haven't.  Muscles.  Yes, we know that one.  There is another however,  another pathway that we have yet to block.  

The latest is there is a whole new line up of medication.  They are stirring away from TNF blockers.  Hmmm.  We shall see : )

No limp.  Skin, Okish.  Calcium, Goodish.  Energy, over the top.  Thank you steroids.

1 comment:

  1. I hope they had a great and fun day. We all need a day to relax.